Friday, November 21, 2008

The Pendulum Of Consciousness

Some interesting developments with my hematologist. He attended a conference a week or two ago about a very rare and very underdiagnosed genetic mutation that he thinks I might have. It's hard to fathom that anything could be rarer than my current diagnosis (essential thrombocythemia), but apparently one exists, and I might be a likely candidate.

Mind you, in all of Europe and North America, there's only about 7,000 diagnosed cases, so my chances of being one of them is akin to winning the TriState Lotto, but if anyone is going to have this thing, it could well be me, as "rare" is my CB handle all things health-related.

Not only do I have a rare blood disorder, but I've had even rarer complications, which has led many a practitioner to say there's "something else going on" with me, as nearly everything I've suffered with has been something a doctor only reads about in medical textbooks. As my GP has often said, "no one actually gets these things," and both he and my hematologist have never seen a patient like me in their combined 60 years of practice.

Called Paroxysmal Noctornal Hemoglobinuria (I still don't have it memorized), it's a condition that causes the exact types of clots I've endured, even down to their location, and explains a patient's inability to heal from infection (hence the trouble in my jawbone), among other things.

My doc has told me not to get too excited that this could be me, but I told him that as disappointment hasn't killed me in the past, why stop the optimism now? We're going to do the test the Monday after Thanksgiving, and odds alone would suggest slim chances for diagnosis, but hey--it's nice to live in hope for once.

In fact, this feeling of hope truly has buoyancy. Even though these posts often sound so glum (because, well, I often am), I tend to have a curiously buoyant spirit, even in the worst of times. People who don't read my blog would most likely be surprised to know of what I endure on a daily basis, as my interest in life, and especially my work, can sometimes eclipse anything else I'm feeling in that moment, even pain (although to be honest, that's rare).

This was noted to me by my life coach, Nancy Colasurdo, this week, who's one person in particular who witnesses these extremes. In the evening, she'll read about a particularly bad day I'm having, yet upon meeting the next day about my goals, I'll get so fired up about my dreams and visions that it's hard for her to reconcile these two seemingly disparate states.

Mind you, no matter what I'm feeling, I still dress up in some swanky or nutty outfit almost every day, the impression of which must surely be a curious one. Lately, not only have I been sporting a shaved head, but also a fabulous Marc Jacobs coat that I got for a steal on eBay, along with an aviator's cap that Nancy applauded as yet another stunt I'm "getting away with."

I must admit that I, too, can be baffled not just by my overly harsh life experience, but also by the joy I can still feel in spite of it. As Nancy recently mentioned, she can only imagine what I'd be like without all the pain and pills. If I can get as much done as I do in this painful, drugged state, just think of what I could do pain-free and alert.

Of course, there's a good chance that I'd just watch more television, but with this looming possibility of a better diagnosis and a new cutting-edge treatment, I actually feel a twinge of fear and excitement at the thought of a ball-and-chain-free life. This pain and fatigue weighs me down so much that in the same way one's arm seems to float after intense downward pressure is lifted, I fear I'd instantly launch into a full-body orbit once these pressures were removed.

Occasionally, I do have a spectacular day, when I awake feeling healthy and pain-free, and I suddenly remember what it feels like to be 15 years old again. I'm looking through the eyes of someone who doesn't even think about her body, and I can assure you, it's heavenly.

If I am diagnosed with PNH (let's just go with the short version), my doctor told me that the treatment will cost...drum roll...$365,000 per year! Upon seeing my face after telling me this, he quickly followed up with an even more staggering fact; that the government will actually pay for it. I'm not sure which part of that equation is nuttier--the cost of the medication itself or the government's willingness to value the life of one citizen that much. I suspect it's all part of this new research, but whatever the reason, I'm grateful.

Of course, I'm not even diagnosed yet, but it's so like me to get so far ahead of myself, which is why I hired Nancy in the first place.

I do need to stop thinking about it, though, as it all seems too good to be true. To anyone reading this, please say a prayer for me that when they do the test, whatever result they get will be the correct one, and that whatever that result is, I'll be able to handle it, for either answer will swing the pendulum of my consciousness to the extreme.

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1 comment:

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